Down Syndrome Bill

Meg Hillier Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[Dame Meg Hillier (Hackney South and Shoreditch) (Lab/Co-op)]

I also congratulate the right hon. Member for North Somerset (Dr Fox) and pay tribute to Portsmouth Down Syndrome Association. I grew up in Portsmouth, and it is not a big place, but the association has a reach that seems to have helped Members on both sides of the House and across the country. I thank the National Down Syndrome Policy Group and the all-party parliamentary group for Down syndrome, which between them have led to the right hon. Gentleman tabling this world-leading Bill.

Just before the 2019 election, there was a lonely group of women standing in the Upper Waiting Hall with an exhibition about the challenges of being parents of children with Down’s syndrome—everything from maternity to education. It was bad luck they chose a difficult time to be here. I was about the last person in the building, and they were not able to speak to many Members, but they were determined and others since have been determined, and they have led to this point today. They got the all-party parliamentary group going and this Bill in place. It is always tempting when we get the chance to run a private Member’s Bill, because we get so many requests, so I pay tribute to the right hon. Gentleman for choosing this issue.

The Bill is long overdue. People with Down’s syndrome have additional challenges, but they are human beings and they have human rights. This is, in essence, human rights legislation.

We know the challenges: the National Audit Office and the Public Accounts Committee, which I have the privilege of chairing, have highlighted the lower health outcomes of people with learning disabilities in general, and there are particular issues for children and young people with Down’s syndrome. There is currently no specific requirement for people with Down’s syndrome to receive adapted services so, by obliging the Secretary of State to provide guidance, the Bill is a really important step. That guidance is needed in so many areas, including health, education, social care and, crucially, employment.

The right hon. Member for North Somerset highlighted the important issue of life expectancy, which was echoed by the hon. Member for Broxbourne (Sir Charles Walker). So many parents are worried about what will happen to their child as they grow up. People with Down’s syndrome are living longer, which is fantastic news, but any parent of any child with a disability, including a child born with Down’s syndrome, worries about what will happen to them. The state has needed to step up for some time, so I congratulate the Minister for giving the Bill a fair wind today, because it will provide some reassurance to parents.

I wish to pay tribute to my constituent Godwin, who is 17 and whose parents, to whom I also pay tribute, have spent some time sharing their experience with me. Godwin has been mainstreamed through education in Hackney and is now in sixth-form college, but he is approaching a difficult point and there is a challenging time ahead. It has not been an easy ride all the way through, but employment is the next step. His parents tell me that they are told too often that catering is the answer. As others have highlighted, only 6% of people with learning disabilities are in employment. There have been prejudices in maternity care and information and in education; we need to see that step change and the provision of support for a range of employment opportunities. That will be a challenge.

The Bill is right to require the Secretary of State to provide guidance, updated as necessary. We have previously had debates about what someone is paid to do a job and what a job is; a job is about human dignity and purpose and we should not write people off when they have come through mainstream education or narrow their opportunities. There are people with Down’s syndrome who are mainstream actors and mainstream in other roles, but they are the exception, not the rule. I hope the Minister will work with colleagues across Government to make sure that these issues are raised in other Departments.

There is currently no formal advice, even in respect of education. Godwin was well supported, but even then there were challenges. It is not difficult to train teachers. If people are trained in how to speak to someone with Down’s syndrome and explain what is required of them, that will benefit all children in the classroom.

One thing that I have learned about people with Down’s syndrome is that they are incredibly patient, but now is their time. They have waited long enough, and we must do all we can to ensure that this legislation leads to the correct services and support being available to them. The Bill is the first step, but, as we have highlighted repeatedly, paid employment is an issue, education support is patchy, health outcomes are still poor and parents worry about their children as they become adults.

This is a human rights Bill, but we need not just to pass it; we need to challenge the Government—I know the Minister will be up for this—to set metrics and targets and to measure every year the progress we should see in outcomes for people with Down’s syndrome. There is still a lot of heavy lifting to do. This Bill is a welcome beginning, but I think everyone in the Chamber stands four-square with the Government and the right hon. Member for North Somerset, and with all people with Down’s syndrome in this country and their families, in saying that we will keep watching and make sure that this legislation is implemented by this Government and Governments to come.